177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice
OBJECTIVES/GOALS: Empowering the Participant Voice (EPV) is a 6-CTSA Rockefeller-led collaboration to developcustom REDCap infrastructure to collect participant feedback using the validated Research Participant Perception Survey (RPPS), demonstrate its value in use cases, and disseminate it for broa...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Cambridge University Press
2024-04-01
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| Series: | Journal of Clinical and Translational Science |
| Online Access: | https://www.cambridge.org/core/product/identifier/S2059866124001687/type/journal_article |
| _version_ | 1797226973900046336 |
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| author | Rhonda Kost Ranee Chatterjee Ann Dozier Daniel Ford Joseph Andrews Nancy Green Paul A. Harris Alex Cheng |
| author_facet | Rhonda Kost Ranee Chatterjee Ann Dozier Daniel Ford Joseph Andrews Nancy Green Paul A. Harris Alex Cheng |
| author_sort | Rhonda Kost |
| collection | DOAJ |
| description | OBJECTIVES/GOALS: Empowering the Participant Voice (EPV) is a 6-CTSA Rockefeller-led collaboration to developcustom REDCap infrastructure to collect participant feedback using the validated Research Participant Perception Survey (RPPS), demonstrate its value in use cases, and disseminate it for broad adoption. METHODS/STUDY POPULATION: The EPV team developed data and survey implementation standards, and specifications for the dashboard and multi-lingual RPPS/REDCap project XML file. The VUMC built a custom At-a-Glance Dashboard external module that displays Top Box scores (percent best answer), with conditional formatting to aid analysis, and response/completion rates. Results populate site dashboards, and aggregate to a multi-site dashboard for benchmarking. Results can be filtered by participant/study characteristics. Sites developed individual use cases, leveraging local infrastructure, initiatives and stakeholder input. Infrastructure and guides were designed for dissemination through public websites. RESULTS/ANTICIPATED RESULTS: Five sites sent 23,797surveys via email, patient portal or SMS. 4,133 (19%) participants diverse in age, race, and ethnicity, returned responses. Sites analyzed their data and acted on selected findings, improving recruitment, communication and feeling valued. Aggregate scores for feeling listened to and respected were hight (>90%%); scores for feeling prepared by the consent process were lower (57-77%) and require action. Some groups experiences were better than others. Sites differed significantly in some scores. Dissemination of EPV is underway. Infrastructure and guides are downloadable free of charge, with advice from the EPV team. In 2023, a sixth site began piloting a lower literacy survey version and syncing data to the consortium dashboard. DISCUSSION/SIGNIFICANCE: The EPV RPPS/REDCap infrastructure enabled sites to collect participant feedback, identify actionable findings and benchmark with peers. Stakeholders and collaborators designed and tested local initiatives to increase responses and diversity, address disparities, and discover better practices. |
| first_indexed | 2024-04-24T14:33:25Z |
| format | Article |
| id | doaj.art-93214d1bc0894b6786a6547e5339a8e1 |
| institution | Directory Open Access Journal |
| issn | 2059-8661 |
| language | English |
| last_indexed | 2024-04-24T14:33:25Z |
| publishDate | 2024-04-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj.art-93214d1bc0894b6786a6547e5339a8e12024-04-03T01:59:55ZengCambridge University PressJournal of Clinical and Translational Science2059-86612024-04-018535310.1017/cts.2024.168177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant VoiceRhonda Kost0Ranee Chatterjee1Ann Dozier2Daniel Ford3Joseph Andrews4Nancy Green5Paul A. Harris6Alex Cheng7The Rockefeller UniversityDuke UniversityUniversity of RochesterJohns Hopkins UniversityWake Forest Health Sciences UniversityIrving Institute for Clinical Translational Columbia University Irving Medical CenterVanderbilt UniversityVanderbilt UniversityOBJECTIVES/GOALS: Empowering the Participant Voice (EPV) is a 6-CTSA Rockefeller-led collaboration to developcustom REDCap infrastructure to collect participant feedback using the validated Research Participant Perception Survey (RPPS), demonstrate its value in use cases, and disseminate it for broad adoption. METHODS/STUDY POPULATION: The EPV team developed data and survey implementation standards, and specifications for the dashboard and multi-lingual RPPS/REDCap project XML file. The VUMC built a custom At-a-Glance Dashboard external module that displays Top Box scores (percent best answer), with conditional formatting to aid analysis, and response/completion rates. Results populate site dashboards, and aggregate to a multi-site dashboard for benchmarking. Results can be filtered by participant/study characteristics. Sites developed individual use cases, leveraging local infrastructure, initiatives and stakeholder input. Infrastructure and guides were designed for dissemination through public websites. RESULTS/ANTICIPATED RESULTS: Five sites sent 23,797surveys via email, patient portal or SMS. 4,133 (19%) participants diverse in age, race, and ethnicity, returned responses. Sites analyzed their data and acted on selected findings, improving recruitment, communication and feeling valued. Aggregate scores for feeling listened to and respected were hight (>90%%); scores for feeling prepared by the consent process were lower (57-77%) and require action. Some groups experiences were better than others. Sites differed significantly in some scores. Dissemination of EPV is underway. Infrastructure and guides are downloadable free of charge, with advice from the EPV team. In 2023, a sixth site began piloting a lower literacy survey version and syncing data to the consortium dashboard. DISCUSSION/SIGNIFICANCE: The EPV RPPS/REDCap infrastructure enabled sites to collect participant feedback, identify actionable findings and benchmark with peers. Stakeholders and collaborators designed and tested local initiatives to increase responses and diversity, address disparities, and discover better practices.https://www.cambridge.org/core/product/identifier/S2059866124001687/type/journal_article |
| spellingShingle | Rhonda Kost Ranee Chatterjee Ann Dozier Daniel Ford Joseph Andrews Nancy Green Paul A. Harris Alex Cheng 177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice Journal of Clinical and Translational Science |
| title | 177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice |
| title_full | 177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice |
| title_fullStr | 177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice |
| title_full_unstemmed | 177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice |
| title_short | 177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice |
| title_sort | 177 placing participant experiences at the center of improving research by empowering the participant voice |
| url | https://www.cambridge.org/core/product/identifier/S2059866124001687/type/journal_article |
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